BMJ Neurology Open最新文献

{"title":"Batoclimab as induction and maintenance therapy in patients with myasthenia gravis: rationale and study design of a phase 3 clinical trial","authors":"Michael Benatar, Heinz Wiendl, Richard Nowak, Yan Zheng, William Macias","doi":"10.1136/bmjno-2023-000536","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000536","url":null,"abstract":"Introduction Batoclimab, a fully human monoclonal antibody that inhibits the neonatal fragment crystallisable receptor, has shown promising phase 2 clinical trial results in patients with generalised myasthenia gravis (gMG). Methods and analysis In this phase 3, randomised, quadruple-blind, placebo-controlled study, adults with gMG will be randomised 1:1:1 to induction therapy with batoclimab 680 mg, batoclimab 340 mg, or placebo, administered once weekly (QW) for 12 weeks as a subcutaneous injection. The primary endpoint is the change from baseline to week 12 on the Myasthenia Gravis Activities of Daily Living (MG-ADL) score. Batoclimab-treated patients achieving a ≥2-point improvement from baseline on MG-ADL at week 10 or week 12 will be re-randomised to maintenance treatment with batoclimab 340 mg QW, batoclimab 340 mg every other week (Q2W), or placebo for 12 weeks; batoclimab-treated patients with a <2-point improvement at week 10 and week 12 will be switched to placebo for the maintenance period and discontinued thereafter. Placebo-treated patients from the induction period will be re-randomised to batoclimab 340 mg QW or Q2W in the maintenance period. All patients who complete the maintenance period and achieve a ≥2-point improvement from baseline in MG-ADL during ≥1 of the final 2 visits of the induction and/or maintenance periods will continue their current batoclimab dose (or switch to batoclimab 340 mg QW for those on placebo) for a 52-week long-term extension (LTE-1). Patients who complete LTE-1 may enter a second, optional 52-week LTE (LTE-2). Ethics and dissemination This trial is being conducted in accordance with the International Council for Harmonisation Guideline for Good Clinical Practice, the Declaration of Helsinki, and each site’s Institutional Review Board/Independent Ethics Committee. All patients must provide written informed consent. Results from this study will be published in peer-reviewed journals and presented at national and global conferences. Trial registration number [NCT05403541][1]. [1]: /lookup/external-ref?link_type=CLINTRIALGOV&access_num=NCT05403541&atom=%2Fbmjno%2F6%2F1%2Fe000536.atom","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139423182","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Twelve-month efficacy of CGRP monoclonal antibodies and predictive value of short-term response: results of an Australian multicentre study","authors":"Jason Charles Ray, Linda Dalic, Josephine Baker, Shuli Cheng, Elspeth Jane Hutton, Manjit Matharu","doi":"10.1136/bmjno-2023-000547","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000547","url":null,"abstract":"Introduction Clinical trials show that calcitonin gene-related peptide monoclonal antibodies (CGRP mAbs) are effective preventative treatments for chronic migraine. Their efficacy over longer time periods and in cohorts originally excluded from trials remains uncertain. This study aims to explore the impact of CGRP mAbs in an Australian real-life setting. Methods A multicentre cohort study was performed in the tertiary headache clinics of the Alfred and Austin Hospitals, Melbourne, Australia. Patients were commenced on a CGRP mAb for chronic migraine and asked to keep a headache diary, recorded at 3 monthly appointments for 12 months. Primary outcome was a ≥50% reduction in monthly headache days (MHD). Results From a population of 105 patients, 90 patients commenced galcanezumab and 15 commenced fremanezumab. The ≥50% responder rate of the cohort was 52.4% after 3 months. Over 12 months follow-up, 25.7% of the cohort ceased due to a lack of efficacy and 16.2% ceased due to an adverse event. There was no difference in response or cessation between medications. There was poor agreement in 3-month and 12-month response rates (Cohen’s κ=0.130; p=0.171). On subgroup analysis, continuous headache at baseline and number of trialled preventative treatments were the only factors associated with efficacy. Conclusion CGRP mAbs were associated with sustained reductions in MHD over 12-month follow-up in patients with resistant migraine in Australia. Further studies are required to determine treatment options for patients with continuous headache. Poor agreement between outcomes at 3 and 12 months highlights the need to assess some patients at later timepoints. Data are available on reasonable request. Data is available on reasonable request.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139423219","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Poor haemorrhagic stroke outcomes during the COVID-19 pandemic are driven by socioeconomic disparities: analysis of nationally representative data","authors":"Abdulaziz T Bako, Thomas Potter, Alan P Pan, Karim A Borei, Taya Prince, Gavin W Britz, Farhaan S Vahidy","doi":"10.1136/bmjno-2023-000511","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000511","url":null,"abstract":"Background Nationally representative studies evaluating the impact of the COVID-19 pandemic on haemorrhagic stroke outcomes are lacking. Methods In this pooled cross-sectional analysis, we identified adults (≥18 years) with primary intracerebral haemorrhage (ICH) or subarachnoid haemorrhage (SAH) from the National Inpatient Sample (2016–2020). We evaluated differences in rates of in-hospital outcomes between the prepandemic (January 2016–February 2020) and pandemic (March–December 2020) periods using segmented logistic regression models. We used multivariable logistic regression to evaluate differences in mortality between patients admitted from April to December 2020, with and without COVID-19, and those admitted from April to December 2019. Stratified analyses were conducted among patients residing in low-income and high-income zip codes, as well as among patients with extreme loss of function (E-LoF) and those with minor to major loss of function (MM-LoF). Results Overall, 309 965 patients with ICH (47% female, 56% low income) and 112 210 patients with SAH (62% female, 55% low income) were analysed. Prepandemic, ICH mortality decreased by ~1% per month (adjusted OR, 95% CI: 0.99 (0.99 to 1.00); p<0.001). However, during the pandemic, the overall ICH mortality rate increased, relative to prepandemic, by ~2% per month (1.02 (1.00 to 1.04), p<0.05) and ~4% per month (1.04 (1.01 to 1.07), p<0.001) among low-income patients. There was no significant change in trend among high-income patients with ICH (1.00 (0.97 to 1.03)). Patients with comorbid COVID-19 in 2020 had higher odds of mortality (versus 2019 cohort) only among patients with MM-LoF (ICH, 2.15 (1.12 to 4.16), and SAH, 5.77 (1.57 to 21.17)), but not among patients with E-LoF. Conclusion Sustained efforts are needed to address socioeconomic disparities in healthcare access, quality and outcomes during public health emergencies.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139465205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Relationship between emotion recognition and cognition in multiple sclerosis: a meta-analysis protocol","authors":"Béatrice Degraeve, Audrey Henry, Bruno Lenne","doi":"10.1136/bmjno-2023-000471","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000471","url":null,"abstract":"Introduction Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative disease of the central nervous system characterised by a broad and unpredictable range of symptoms, including cognitive and socio-cognitive dysfunction. Alongside the well-known deficits in information processing speed (IPS), executive functioning and episodic memory, recent evidence also highlighted socio-cognitive impairments in MS, such as emotion-recognition deficits. Recently, several studies investigated the association between emotion-recognition and cognitive impairment to assess whether social cognition is parallel to (or even dependent on) general cognitive dysfunction. Yet, there have been inconsistent findings, raising the need for a meta-analysis of the literature. Objectives The aim of the present paper is to outline the protocol for an upcoming meta-analysis we designed to clarify these conclusions. Methods and analysis We plan to estimate combined effect sizes for the association between emotion-recognition and cognitive impairment in MS across three cognitive domains (IPS, executive functions and episodic memory) and 7 emotion scores of interests (total and by 6-basic emotions subscores). Further, we plan to investigate whether identified variables are the cause for heterogeneity in any combined association. To that end, we will conduct additional meta-regression analyses to explore whether overall correlations differ according to clinical characteristics of MS patients (ie, disease duration, MS-phenotype, severity of depression and disability). Ultimately, this study will provide support either for an association of these disorders (in which emotion-recognition deficits might result from more fundamental cognitive dysfunction), or for two distinct sets of symptoms which may occur independently, for targeted patient profiles.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139409711","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Monash-Alfred protocol for assessment of atypical parkinsonian syndromes (MAP-APS)","authors":"Timothy P Siejka, Kelly L Bertram, Huiliang M Tang, Dominic Thyagarajan, Terence J O’Brien, Helmut Butzkueven, Lucy Vivash, Ian H Harding","doi":"10.1136/bmjno-2023-000553","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000553","url":null,"abstract":"Introduction Atypical parkinsonian syndromes (APS) are rare neurodegenerative syndromes for which parkinsonism is one significant feature. APS includes progressive supranuclear palsy (PSP), multiple system atrophy (MSA) and corticobasal syndrome (CBS). The diagnosis of APS remains reliant on clinical features with no available diagnostic or prognostic biomarker. Clinical scales remain the gold standard assessment measures in clinical trials and research. The lack of standardised approach for research cohorts has contributed to shortcomings in disease understanding and limits collaboration between researchers. The primary objectives of this study are to (1) establish an assessment protocol for parkinsonian syndromes and (2) to implement it at a single site to establish the viability and utility of populating a clinical and biological databank of patients with APS. Methods The Monash Alfred Protocol for Assessment of APS was devised by expert consensus within a broad multidisciplinary team. Eligible patients are diagnosed as possible or probable PSP, MSA or CBS by a consultant neurologist with expertise in movement disorders. Participants will be assessed at recruitment and then annually for up to 3 years; individuals within 5 years of index symptom onset will also undergo a once-off 6-month assessment. Ethics and dissemination Each participant or their legally authorised representative will provide informed written consent prior to commencement of the study. Data will be stored on a locally hosted Research Electronic Data Capture database. Trial registration number Australian New Zealand Clinical Trials Registry (ANZCTN 12622000923763).","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139463687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sudden unilateral audiovestibular loss due to acute labyrinthine haemorrhage can be missed on early MRI brain sequences: case report","authors":"Patrick Harrison, John Blazak, Joshua Richmond, Kristy Fraser-Kirk, Aliese Hoffmann, Grant Collins, Benjamin K-T Tsang","doi":"10.1136/bmjno-2023-000563","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000563","url":null,"abstract":"Background Labyrinthine haemorrhage is a rare vascular disorder often presenting with the triad of acute vertigo, sudden sensorineural hearing loss and tinnitus. There are minimal reports on imaging progression over the acute period. Index case A woman in her mid-40s presented with acute vertigo, sudden left-sided hearing loss and tinnitus, consistent with acute unilateral audiovestibular loss. Left peripheral vestibular hypofunction was confirmed acutely on video head impulse testing, and pure tone audiometry showed a profound left sensorineural hearing loss. An MRI brain including diffusion-weighted imaging within 24 hours was normal. Delayed MRI brain and internal acoustic canal after 7 days demonstrated increased 3D fluid-attenuated inversion recovery and T1 signal throughout the left cochlea and semicircular canals, without contrast enhancement. This was consistent with labyrinthine haemorrhage. She received early oral prednisone followed by three doses of intratympanic dexamethasone. At 12 months follow-up the patient remained profoundly deaf, however, balance and vestibular symptoms improved with early vestibular physical rehabilitation. Conclusion We report a case of acute labyrinthine haemorrhage missed on an early MRI brain sequence. This diagnosis should be considered in presentations of acute audiovestibular loss, and delayed MRI including internal auditory canal sequences may be important for diagnosis. Data are available upon reasonable request.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139496431","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impaired mobility and MRI markers of vascular brain injury: Atherosclerosis Risk in Communities and UK Biobank studies","authors":"Richa Sharma, Adam de Havenon, Cyprien Rivier, Seyedmehdi Payabvash, Rachel Forman, Harlan Krumholz, Guido J Falcone, Kevin N Sheth, Walter N Kernan","doi":"10.1136/bmjno-2023-000501","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000501","url":null,"abstract":"Background Vascular brain injury (VBI) may be an under-recognised contributor to mobility impairment. We examined associations between MRI VBI biomarkers and impaired mobility. Methods We separately analysed Atherosclerosis Risk in Communities (ARIC) and UK Biobank (UKB) study cohorts. Inclusion criteria were no prevalent clinical stroke, and available brain MRI and balance and gait data. MRI VBI biomarkers were (ARIC: ventricular and white matter hyperintensity (WMH) volumes, non-lacunar and lacunar infarctions, microhaemorrhage; UKB: ventricular, brain and WMH volumes, fractional anisotropy (FA), mean diffusivity (MD), intracellular and isotropic free water volume fractions). Quantitative biomarkers were categorised into tertiles. Mobility impairment outcomes were imbalance and slow walk in ARIC and recent fall and slow walk in UKB. Adjusted multivariable logistic regression analyses were performed. Results We included 1626 ARIC (mean age 76.2 years; 23.4% imbalance, 25.0% slow walk) and 40 098 UKB (mean age 55 years; 15.8% falls, 2.8% slow walk) participants. In ARIC, imbalance associated with four of five VBI measures (all p values<0.05), most strongly with WMH (adjusted OR, aOR 1.64; 95% CI 1.18 to 2.29). Slow walk associated with four of five VBI measures, most strongly with WMH (aOR 2.32; 95% CI 1.66 to 3.24). In UKB, falls associated with all VBI measures except WMH, most strongly with FA (aOR 1.16; 95% CI 1.08 to 1.24). Slow walking associated with WMH, FA and MD, most strongly with FA (aOR 1.57; 95% CI 1.32 to 1.87). Conclusions VBI is associated with mobility impairment in community-dwelling, clinically stroke-free cohorts. Consequences of VBI may extend beyond clinically apparent stroke to include mobility. Data are available in a public, open access repository. What the data are—Atherosclerosis Risk in Communities Study (ARIC). Apply for access at: <https://biolincc.nhlbi.nih.gov/login/?next=/requests/type/aric>. The repository where they are held—NHLBI Biologic Specimen and Data Repository (BioLINCC). Any conditions of reuse (eg, licence, embargo, copyright)—BioLINCC RegistrationWhat the data are—UK Biobank Database. Apply for access at: <https://www.ukbiobank.ac.uk/enable-your-research/apply-for-access>. The repository where they are held—UK Biobank DatabaseAnd any conditions of reuse (eg, licence, embargo, copyright)—UK Biobank Registration.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139558743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Detecting signatures of consciousness in acute brain injury after stimulation with apomorphine and methylphenidate: protocol for a placebo-controlled, randomized, cross-over study","authors":"Marwan H Othman, Kirsten Møller, Jesper Kjaergaard, Daniel Kondziella","doi":"10.1136/bmjno-2023-000584","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000584","url":null,"abstract":"Introduction Acute brain injury can lead to states of decreased consciousness, that is, disorder of consciousness (DoC). Detecting signs of consciousness early is vital for DoC management in the intensive care unit (ICU), neurorehabilitation and long-term prognosis. Our primary objective is to investigate the potential of pharmacological stimulant therapies in eliciting signs of consciousness among unresponsive or low-responsive acute DoC patients. Methods In a placebo-controlled, randomised, cross-over setting, we evaluate the effect of methylphenidate and apomorphine in 50 DoC patients with acute traumatic or non-traumatic brain injury admitted to the ICU. Patients are examined before and after administration of the trial drugs using (1) neurobehavioural scales to determine the clinical level of consciousness, (2) automated pupillometry to record pupillary responses as a signature for awareness and (3) near-infrared spectroscopy combined with electroencephalography to record neurovascular coupling as a measure for cortical activity. Primary outcomes include pupillary dilations and increase in cortical activity during passive and active paradigms. Ethics The study has been approved by the ethics committee (Journal-nr: H-21022096) and follows the principles of the Declaration of Helsinki. It is deemed to pose minimal risks and to hold a significant potential to improve treatment options for DoC patients. If the stimulants are shown to enhance cortical modulation of pupillary function and neurovascular coupling, this would warrant a large multicentre trial to evaluate their clinical impact. Dissemination Results will be available on EudraCT, clinicaltrialsregister.eu and published in an international peer-reviewed journal. Trial registration number EudraCT Number: 2021-001453-31.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139423218","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"ICAM-1 and CRP as biomarkers of 3-month outcome in acute ischaemic stroke","authors":"Gulnora Sattarovna Rakhimbaeva, Kutlibika Bakhtiyor kizi Abdurakhmonova","doi":"10.1136/bmjno-2023-000516","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000516","url":null,"abstract":"Background It is clear that, inflammation deteriorates cerebral injury during the acute phase of stroke. While this process is going on, intercellular adhesion molecule-1 (ICAM-1) has a crucial role to play in mediating migration of immune cells into the damaged area. Furthermore, C reactive protein (CRP) is an essential inflammatory molecule in human organism. This research aims to investigate the association between ICAM-1, highly sensitive CRP(hs-CRP) and the prognosis of acute ischaemic stroke (AIS). Methods 118 patients with AIS who were treated at Tashkent Medical Academy were participants in this research project. Blood samples were collected from patients on an empty stomach within 24 hours of admission. Modified Rankin Scale (mRS) was used in order to assess the functional prognosis in 3 months following the case of stroke in patients. The inadequate prognosis is described as mRS≥3. Each biomarker’s potential to predict has also been evaluated with receiver operating characteristic analysis. Results ICAM-1 was identified to be an independent predictor of 3-month outcome (OR 1.05, 95 % CI 0.848 to 1.625; p=0.02) (area under the curve (AUC)=0.82 %). Independent associations with functional outcome were also found to be true for hs-CRP (OR 1.22, 95 % CI 0.78 to 1.86; p=0.03) (AUC=0.74 %). Conclusions The outcomes of a 3-month study carried out on patients with AIS showed ICAM-1 and hs-CRP to be independent predictors. Data are available on reasonable request.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138826923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective","authors":"Sally Abbott, Amanda Denton, Sui H Wong, Susan P Mollan, Kim CM Bul","doi":"10.1136/bmjno-2023-000527","DOIUrl":"https://doi.org/10.1136/bmjno-2023-000527","url":null,"abstract":"Background Idiopathic intracranial hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient–clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH. Methods A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarise quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses. Results There were 625 respondents. One-fifth of PwIIH (n=127/603, 21%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support and (5) adapt communication. Conclusion The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient–HCPs communication in IIH. No data are available. The data are not shareable due to the qualitative nature of data collection, in order to maintain participant anonymity.","PeriodicalId":52754,"journal":{"name":"BMJ Neurology Open","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138561324","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}